A group of people suffering from a painful and potentially embarrassing chronic skin condition are banding together to pressure the Newfoundland and Labrador government to expand funding for the newest treatment options — which are neither cheap, nor easy to access.

Samantha Piercey is one of those leading the charge on behalf of biologics, a class of drugs that have brought major changes to people like her, who live with psoriasis, a condition for which there is no cure.

At 28, Piercey has spent more than half her life trying to treat it, struggling with both physical pain and uncomfortable public interactions. Among the worst: having to tell customers at her service job that what they saw on her skin was not contagious.

We shouldn't have to fail at all these different treatments in order to get access to the really effective therapies.- Deva Murthy

But that was before she found relief through the biologic Stelara, which had a profound effect on both her physical and mental health.

"I can go into work and I know I'm not going to get comments throughout the day. I can go out in public and I can just be me, be happy, be comfortable in my own skin, and that's an amazing feeling," Piercey said.

"If I can help someone realize that there are options out there, you can go through treatments to get your life back under control and feel more like yourself, feel happy in your own skin … If I can help anyone out there with psoriasis realize that, I would be so happy."

'It was difficult'

Piercey is one of the six board members of PsoriasisNL, an advocate group formerly known as the Psoriasis Society of Newfoundland.

The group has rebranded, with new members and a new goal of better access to biologics, which is a kind of drug produced from, containing components of, or synthesized from, living organisms.

The common chronic skin condition — it affects one million Canadians, according to the Canadian Dermatology Association — is characterized by red patches, flaking skin and pain. While its exact cause is unknown, it's linked to malfunctions in the immune system.

There's also a strong hereditary element, with one-third of psoriasis patients having a family member also affected.

Every patient's psoriasis is different, and so too are the treatments: the steroid and vitamin creams that soothe one person's skin may fail, or even irritate, another's. Other options include ultraviolet light therapy, and immune system suppressing medications.

That range of treatments is well-known to Deva Murthy, the executive director of PsoriasisNL. She has lived with the condition since she was 11, and has seen leaps and strides in available therapies since.

"There was very little available to us then, and what was available was quite dangerous and quite labour intensive," Murthy said.

"Creams and baths and going for light therapy everyday, when you're trying to work or go to school, it was difficult."

She tried many of them, before achieving long-term relief in 2008.

Deva Murthy is an executive director at PsoriasisNL. Murthy developed psoriasis early in childhood and has found relief through biologic medicines. (Stephen Miller/CBC)

Patients 'needlessly suffer'

Consider then biologics, which are becoming a preferred treatment method for psoriasis. In 2014, Consumer Reports reviewed studies involving six different biologics used to fight psoriasis, and found that more than half of the people who received a biologic experienced a substantial improvement.

But like other provinces and territories, biologics are only covered by the Newfoundland and Labrador government with special authorization, after patients exhaust a gauntlet of other treatments.

Patients must have tried Methotrexate, a chemotherapy agent and immune system suppressant, Cyclosporine, an immunosuppressant medication, and UVB phototherapy, without success. They must also have more than 10 per cent of their body's surface area affected to qualify.

"Most people can get access, but like I said, they have to jump through some hoops," said Murthy.

"We shouldn't have to fail at all these different treatments in order to get access to the really effective therapies … that's just having somebody needlessly suffer."

With effectiveness, comes expense

Unfortunately for psoriasis patients considering paying for biologic treatments out of pocket, the expense increases alongside the effectiveness.

According to the National Center for Biotechnology Information, without coverage, your first year on the popular biologic Stelara can cost between $25,000 and $35,000, depending on dosage and method of administration.

Meanwhile, the annual cost of Methotrexate — which is fully covered — is between $164 and $521 annually, depending on the dosage.

Humira is one of the most commonly prescribed biologic drugs for treating psoriasis, effective for patients with moderate to severe psoriasis. (David J. Phillip/Associated Press)

That cost difference should not have to be the deciding factor in accessing treatment, said Murthy, citing an increased risk of depression and suicide.

Those claims are backed up by 2017 report in the Journal of the American Academy of Dermatology, which concluded "patients with psoriasis have a significantly higher likelihood of suicidal ideation, suicide attempts, and completed suicides."

Province responds

In a statement, the Department of Health said its criteria to access biologics "are not specific to Newfoundland and Labrador. They are agreed upon as part of pan-Canadian negotiations."

If a patient meets the criteria — which does require patients to try, and fail, at first-line treatments — then they can be considered for coverage of Stelara, said the department.

PsoriasisNL hosts the province's only psoriasis support group the third Wednesday of every month in the community room on the second floor of Dominion on Blackmarsh Road in St. John's.

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